So I have been pretty busy lately and not in the normal way of busy but busy with my thoughts. Obviously because i have not written in over two months. But I am back and ready to give my thoughts on a lot of things going on.
Well we all know its hard raising children, let alone twins, then add special needs and it can make things a bit overwhelming at times. But imagine if i could take the special needs away, imagine if someone was to tell you that they did not agree with the diagnosis then what??
So we did what any parent would do and we took the girls to get a second opinion. We met with a Clinical Psychologist, who came highly recommended from a friend, so our confidence level about him was very high. He took his time and sat with us for a good twenty minutes observing the girls so he could get a good feel for the girls and there behavior. Then he went into detail about Sydney saying he felt that she was not autistic. He felt she was very alert, engaging, and made very well eye contact. We were very stunned. Next he looked at Cheyenne and he felt she was developmentally delayed. Stunned again. Here we where two parents who were devastated by the girls diagnosis and now this Dr is saying he feels other wise, still in shock. Don't get me wrong I know I can not change anything, and I am truly blessed to have my beautiful daughters but when you have then re diagnosed and this Dr disagrees with the Autism what do you do?? I mean is this like God opening up the gates to heaven and I am walking in or I am I just foolish for thinking that I can take the Autism out of the equation. Well at first we jumped for joy and we told our close friends and family, then we had a celebration dinner.
So our monthly Autism meetings are at the first of the month. I went and attended our April meeting and there is a wonderful woman with twin boys who is a great mentor for me. So of course I was extactic about telling her the good news and then I thought maybe i should not, this could/would be painful for her to hear. Well i thought about it for a bit then decided I had to tell her. I went into every detail about the Dr and the diagnosis and she was not in shock when i was done. Calm as could be with a smile on her face. So then i was shocked and baffled as to what was going on. She then proceed to tell me that the same thing happened to her and her boys but with several diagnosis's threw out the years. Her boys are almost seven and still have the Autism status and will always. She then proceed to tell me that many families go threw this with two, three, and even four opinions, i was devastated. So I am not the only one.... Well she told me to keep my chin up and ya never know what happens and its all for the best, she is right i just did not want to hear it.
Thus far i am now stuck between a rock and a hard place. I now have mixed feelings about seeing the Dr. again. It is nothing personal to him but to give my hopes up again, that is very hard. My girls are so smart and beautiful and my little world is not complete without them, I just want what is best for them. Anyone who knows me knows i will go see the Dr again, of course to benefit my girls. They are what is most important.
I just want to say thank you to all our friends and family out there who have been here for us threw the thick and thin. You will always mean more to us then you will ever know. I love you all and I thank you from the bottom of my heart. Also to all the moms, dads, grandparents out there who have Autistic children you are wonderful, you make this mothers day everyday with your blogs, tweets, and uplifting spirts, God Bless You all.
“To love is to risk not being loved in return. To hope is to risk pain. To try is to risk failure, but risk must be taken because the greatest hazard in life is to risk nothing.”
Friday, June 17, 2011
Tuesday, April 5, 2011
So Very Thankful
These past few months have been the hardest months of my life. Learning your child has autism is no easy task but learning and growing from it well that is a whole new thing. I am going to admit it has put me in a funk, one which i though never i could get out of but because of so many wonderful supporters in our lives i feel the funk has finally been erased.
In the beginning it was like someone took a piece of me and replaced it with doubt, remorse, pain, jealousy, you name it i felt it. It was so strong in me that I forgot that this was not about me but about my children. Yes this does affect me but this is there lives no mine and I need to be thankful that it was not something so much worse that what it really was. Do not get wrong there were days where i felt the therapy is not working why are we even bothering with this but then there was a breakthrough. There skills are starting to increase daily and I can tell these are not my same children as they where three, six, and nine months ago. Oh My Goodness could these really be the same girls who could barely speak let alone hold a spoon nine months ago. Yes, these are my girls and they are doing it. They are using mannerisms I though never would be possible to use let alone happen. There is breakthroughs and its happening daily i just had my blinders on and was not paying attention. I was so stuck in my own world I forgot about my two daughters, now I am paying attention!! When Sydney grabs my hand and says "Mommy I want fruit snacks" I almost cry because i see the progress and know how wonderful it is for her to speak to me.It is amazing how we take the little things for granted but I am trying daily to remind myself how truly lucky we are.
So from now on anytime I get down or begin a funk I know I can look back and remind myself how lucky we are they are progressing at the rate that they are. Its a beautiful thing seeing you child make progress.
I am beyond thankful for my many friends, family, therapists, and Doctors who have helped me threw this not only for me but have enriched my daughters lives. If it was not for you i do not think my girls would have accomplished as much as they have. You are all so very encouraging to everything they do and continue to accomplish and I am beyond thankful to have you in our lives.
In the beginning it was like someone took a piece of me and replaced it with doubt, remorse, pain, jealousy, you name it i felt it. It was so strong in me that I forgot that this was not about me but about my children. Yes this does affect me but this is there lives no mine and I need to be thankful that it was not something so much worse that what it really was. Do not get wrong there were days where i felt the therapy is not working why are we even bothering with this but then there was a breakthrough. There skills are starting to increase daily and I can tell these are not my same children as they where three, six, and nine months ago. Oh My Goodness could these really be the same girls who could barely speak let alone hold a spoon nine months ago. Yes, these are my girls and they are doing it. They are using mannerisms I though never would be possible to use let alone happen. There is breakthroughs and its happening daily i just had my blinders on and was not paying attention. I was so stuck in my own world I forgot about my two daughters, now I am paying attention!! When Sydney grabs my hand and says "Mommy I want fruit snacks" I almost cry because i see the progress and know how wonderful it is for her to speak to me.It is amazing how we take the little things for granted but I am trying daily to remind myself how truly lucky we are.
So from now on anytime I get down or begin a funk I know I can look back and remind myself how lucky we are they are progressing at the rate that they are. Its a beautiful thing seeing you child make progress.
I am beyond thankful for my many friends, family, therapists, and Doctors who have helped me threw this not only for me but have enriched my daughters lives. If it was not for you i do not think my girls would have accomplished as much as they have. You are all so very encouraging to everything they do and continue to accomplish and I am beyond thankful to have you in our lives.
Friday, February 25, 2011
Daily Progress
These past few weeks have been more involved with Autism than I ever thought possible. All of which is in a very positive and wonderful way.
I attended my first Autism Society meeting February first and it was much more than what I was expecting. Everyone accepted me with open arms and was extremely gracious. I had lots of questions answered and even better more help/support was offered for my girls.It was very nice to mean other parents who have children with Autism better yet it was more wonderful to meet there children. One thing that was extremely positive for me was seeing seven year old twins boys with Autism and they seemed so "normal". I was not expecting that, it gave me a sense of peace knowing my girls would be "normal" as well. I know that sounds sill but you really have no idea what its like to see "normal" children unless you do not have them. In no way whats so ever do I think that I don not have the most wonderful normal girls, I mean normal comparatively. A lot of people were surprised that I had twin girls with Autism. This mainly because it is more affected with males than girls. I think its a blessing that I have my girls and that's the way God wanted it and that is the way it shall be and I mean that in the most positive and wonderful way possible!!
My girls are doing extremely well. They are continuing their therapy twice a week, speech and occupational. We also talked to the county schools this past week about the girls starting preschool this coming up May. I am a little leary about how many days to do but I am guessing I will figure that all out when the times comes. I know five days a week will be what is best for them, especially structurally, but we might start off with three to be safe. Last thing I want to do is overwhelm my girls but must keep structure in mind. Most children with Autism need structure. Plus this past week we where contacted by TEACCH. TEACCH is a program out of Chapel Hill, NC pertaining to children with Autism and will work with children and their families. The girls have there initial intake appointment this March, which we are very excited about. So thus far you can say everything is progressing very well.
I continued to read more and more books and that eventually drove me crazy. There are a lot of books on Autism, which is so wonderful but also very overwhelming. So I decided to take a break from Autism books for a while and get into books that will take my mind off of everything. My time to escape is very important not only to me but my family. Autism is a part of out lives but it does not need to be in my face constantly.
I am still so new to this so I am learning more and more each day. My goal is to keep all of out friends and family as updated as possible. Also please if you have any questions or concerns feel free to ask or tell me. I want everyone who want to know to please ask and I will be as honest with you as possible. I would not be putting this out there for the world if I was not going to be honest with myself and others.
I would like to say thank you you to all of my friends and family that have been so very supportive for me and my beautiful family. I am so very lucky to have you all and you have no idea how wonderful, beautiful and special you are to us all.
“Progress is impossible without change, and those who cannot change their minds cannot change anything.”
~George Bernard Shaw
I attended my first Autism Society meeting February first and it was much more than what I was expecting. Everyone accepted me with open arms and was extremely gracious. I had lots of questions answered and even better more help/support was offered for my girls.It was very nice to mean other parents who have children with Autism better yet it was more wonderful to meet there children. One thing that was extremely positive for me was seeing seven year old twins boys with Autism and they seemed so "normal". I was not expecting that, it gave me a sense of peace knowing my girls would be "normal" as well. I know that sounds sill but you really have no idea what its like to see "normal" children unless you do not have them. In no way whats so ever do I think that I don not have the most wonderful normal girls, I mean normal comparatively. A lot of people were surprised that I had twin girls with Autism. This mainly because it is more affected with males than girls. I think its a blessing that I have my girls and that's the way God wanted it and that is the way it shall be and I mean that in the most positive and wonderful way possible!!
My girls are doing extremely well. They are continuing their therapy twice a week, speech and occupational. We also talked to the county schools this past week about the girls starting preschool this coming up May. I am a little leary about how many days to do but I am guessing I will figure that all out when the times comes. I know five days a week will be what is best for them, especially structurally, but we might start off with three to be safe. Last thing I want to do is overwhelm my girls but must keep structure in mind. Most children with Autism need structure. Plus this past week we where contacted by TEACCH. TEACCH is a program out of Chapel Hill, NC pertaining to children with Autism and will work with children and their families. The girls have there initial intake appointment this March, which we are very excited about. So thus far you can say everything is progressing very well.
I continued to read more and more books and that eventually drove me crazy. There are a lot of books on Autism, which is so wonderful but also very overwhelming. So I decided to take a break from Autism books for a while and get into books that will take my mind off of everything. My time to escape is very important not only to me but my family. Autism is a part of out lives but it does not need to be in my face constantly.
I am still so new to this so I am learning more and more each day. My goal is to keep all of out friends and family as updated as possible. Also please if you have any questions or concerns feel free to ask or tell me. I want everyone who want to know to please ask and I will be as honest with you as possible. I would not be putting this out there for the world if I was not going to be honest with myself and others.
I would like to say thank you you to all of my friends and family that have been so very supportive for me and my beautiful family. I am so very lucky to have you all and you have no idea how wonderful, beautiful and special you are to us all.
“Progress is impossible without change, and those who cannot change their minds cannot change anything.”
~George Bernard Shaw
Saturday, January 22, 2011
Fear in Words
The past two weeks have been the hardest time of my adult life as a parent. Learning your child has Autism is a very hard thing to hear but when you have two and they are both diagnosed with Autism Spectrum Disorder your world crashes.
I think "what have I done, why do I deserve this, is God punishing me." If I pray hard enough will this all go away and be back to normal. But what is normal? This is normal. This had been been my normal, I just did not know. Plus would I want to change my two precious daughters for someone they are not. In no way possible. I love them for exactly who they are and would not change them in any way.
I know this is not the end of the world and could be so much worse but when you hear the word Autism it is like hearing the word Cancer. This is an incurable disease and will or can my child recover. Now I know this is not anything like Cancer it is just a heart wrenching word you can hear when your child is diagnosed with Autism.
Please bare with me if you can as i am bit all out of sorts. This is new and different and i do not like change or not being in control for than matter.For some reason I guess God felt that I needed to get over this and accept that I can not always have my way. He is right; he would not give me anything that I can not handle. This is what I am supposed to do. Still be a loving, caring mother of my most precious beautiful twin daughters who just happen to have Autism Spectrum Disorder.
Since this is all new to me and I do not know a lot about this I am going to try to find out everything I can about ASD. I am going to get as involved as I can, meet other parents, go to meeting and read as many books as i can possible.
So far I have read two books and am on my third. I highly recommend reading "Louder than Words" by Jenny McCarthy, "Facing Autism: Giving parents reasons for hope and guidance for help" by Lynn M. Hamilton. Now I am reading "The Horse Boy: A Father's Quest to heal his son" By Rupert Isaacson. To me this is how I cope. Sticking my head in books and being as aggressive as possible to learn as much as I can. To some this might seem odd because I am not grieving right now but I have to keep my head above water and that is how i am doing this; with books.
Please keep us in your prayers as i know there is no cure but there is always hope for getting better. This is a new journey for my perfect family of four and each day will be difficult, new and exciting. I leave you with this quote...
"To love is to risk not being loves in return. To hope is to risk pain. To try is to risk failure but risk must be taken because the greatest hazard in life is to risk nothing."
I think "what have I done, why do I deserve this, is God punishing me." If I pray hard enough will this all go away and be back to normal. But what is normal? This is normal. This had been been my normal, I just did not know. Plus would I want to change my two precious daughters for someone they are not. In no way possible. I love them for exactly who they are and would not change them in any way.
I know this is not the end of the world and could be so much worse but when you hear the word Autism it is like hearing the word Cancer. This is an incurable disease and will or can my child recover. Now I know this is not anything like Cancer it is just a heart wrenching word you can hear when your child is diagnosed with Autism.
Please bare with me if you can as i am bit all out of sorts. This is new and different and i do not like change or not being in control for than matter.For some reason I guess God felt that I needed to get over this and accept that I can not always have my way. He is right; he would not give me anything that I can not handle. This is what I am supposed to do. Still be a loving, caring mother of my most precious beautiful twin daughters who just happen to have Autism Spectrum Disorder.
Since this is all new to me and I do not know a lot about this I am going to try to find out everything I can about ASD. I am going to get as involved as I can, meet other parents, go to meeting and read as many books as i can possible.
So far I have read two books and am on my third. I highly recommend reading "Louder than Words" by Jenny McCarthy, "Facing Autism: Giving parents reasons for hope and guidance for help" by Lynn M. Hamilton. Now I am reading "The Horse Boy: A Father's Quest to heal his son" By Rupert Isaacson. To me this is how I cope. Sticking my head in books and being as aggressive as possible to learn as much as I can. To some this might seem odd because I am not grieving right now but I have to keep my head above water and that is how i am doing this; with books.
Please keep us in your prayers as i know there is no cure but there is always hope for getting better. This is a new journey for my perfect family of four and each day will be difficult, new and exciting. I leave you with this quote...
"To love is to risk not being loves in return. To hope is to risk pain. To try is to risk failure but risk must be taken because the greatest hazard in life is to risk nothing."
Monday, January 3, 2011
Christmas with two years olds
This year Christmas was much more different than last years. Children at two are much more different than at one, especially when it comes to opening presents. It was very interesting watching my girls try to open presents. It was actually very adorable seeing how excited they got and looked forward to each present. Granted they still needed help opening their gifts but they got the concept down really quickly. What woman does when it comes to opening gifts ;)
One thing that was very adorable was how each gift was so exciting and new but that the paper and boxes where still more interesting. Don't get me wrong my girls still played with all of there toys and tried on all their new outfits but in the end the boxes and paper still one. It is still so funny to me how boxes still win, even if they are diaper boxes.
Another thing I was really proud of was when they ate Christmas dinner with the family. They sat at the table, no booster seats just like an adult and ate there dinner with pride. Eating like big girls with there forks and spoons with there own plates and eating all the same foods as adults. For me this was so very exciting and I know how much my girls loved it too. You could see they stood a little bit taller for the rest of the day, this of course made mommy and daddy's day :)
It altogether was a very wonderful Christmas and much more exciting than the year before. I know next year will be just as or more than exciting and I look forward to many more wonderful Christmas's with two beautiful twin daughters.
One thing that was very adorable was how each gift was so exciting and new but that the paper and boxes where still more interesting. Don't get me wrong my girls still played with all of there toys and tried on all their new outfits but in the end the boxes and paper still one. It is still so funny to me how boxes still win, even if they are diaper boxes.
Another thing I was really proud of was when they ate Christmas dinner with the family. They sat at the table, no booster seats just like an adult and ate there dinner with pride. Eating like big girls with there forks and spoons with there own plates and eating all the same foods as adults. For me this was so very exciting and I know how much my girls loved it too. You could see they stood a little bit taller for the rest of the day, this of course made mommy and daddy's day :)
It altogether was a very wonderful Christmas and much more exciting than the year before. I know next year will be just as or more than exciting and I look forward to many more wonderful Christmas's with two beautiful twin daughters.
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